Hello again, Ran into an interesting and upsetting situation today. My husbands home care aide was called into their office and written up today. This stemmed from an incident around 3 weeks ago, when my husband refused to get out of her car and had a huge temper tantrum. (first and only, so far) I was unable to leave my job without being fired, I asked her to wait til I called Ahz emergency number, but he got out of the car and in the house, so she left. We reported this to her boss on Monday, as it was highly unusual behaviour for him. Well, she is now written up, threatened to be pulled from our house. The other issues the office staff is unhappy with are his refusal to shower. I get him bathed at least once a week. Usually it is no more than that. He will agree to be shaved around 1-2 times a week. They want an emergency alarm given to him...(are you nuts???? He'll use it to ask for cupcakes!!) They don't like the fact that I let him eat what he wants. He has a good appetite and will eat a small portion of healthy food and a huge portion of sweet food. BIG DEAL! He doesn't have high chol or diabetes. They want indoor locks on the doors. FYI, he is severely physically disabled through nuero disease. We can run faster than he could ever throw something, He can't wander cuz he can hardly make it from bathroom to living room. He doesn't remember how to turn around to sit in his wheelchair. You could tap him and he would fall over. Now they want him locked IN???? He has NO chance of wandering, but what about a FIRE! ARGH..I have taken care of this man since the onset of nuero symptoms in 1980 which led to his retirement in 2000. Now severe dementia from continuing brain damage from this nuero disease. I have done it for one simple reason. I LOVE HIM WITH MY WHOLE HEART. The office staff wants him placed in NH soon or will report me and his aide to Adult Protective Services. I need websites and info. A) I KNOW bathing has been re-looked at by geriatric professionals. It can lead to higher incidence of dry skin, cracks and infection. Once a week is adequate if skin is in good shape and sponge bath techniques used on stinky areas. Anyone know website to back this info? B)His teeth (the ones he has left I think 4) are in bad shape, but to him, sugerless gum is the same as brushing. He wont brush and I'm not going to hold him down. C)They want him to excersize. He gets up and goes to bed 1400 times a day. Is this not excersize enough for a man? They want him on a treadmill. This is laughable. He has been unable to be on a treadmill in 15 years. HE CAN BARELY WALK! As you can see. I am very upset and become a raging mother cougar when someone makes allegations that I do not take good care of the one most precious in my life. I'm surfing ahlz pages looking for data Sorry fot this rant...well...maybe not sorry. just pissed at the world.
Oh bless your heart Patty. You have every reason to be upset. Taking care of our AD loved ones is hard enough without that kind of extra stress. Things will probably work out Ok if you can find someone with some sense to explain things to. Love and prayers.
What kind of agency is this????? They obviously don't know the first thing about caring for people with dementia and the physical issues that result from the dementia.
As for bathing, are you using regular soap and water for the sponge baths or cleansing cloths/wipes? This is what they do for people who are bedridden in hospitals for weeks on end and the clothes work well.
Certainly your doctor can justify all of the other ridiculous allegations, especially exercise. I know it's another thing to do in a day that your shouldn't need to.
Life is hard enough!!! This kind of aggravation, you don't need! It's one thing for "outsiders" to be concerned for people who are vunerable, and I know there are people who need advocates to help them out of abusive situations, but it sounds like this agency is totally unqualified to be in the business of caring for people with disabilities.
Patty, that office staff is obviouly unfamiliar with all stages of Alzheimer's, and what a caregiver can and cannot do. They can not seem to understand that the body is failing and exercise of the type they want is impossible. Someone at Alzheimer's Association should be able to give you the information that you need to satisfy them that you are taking good care of your husband in his present stage of AD.
This is the place to come and rant and rage and vent! I am so sorry you are having to go through this! Tonight I feel certain that others here can tell you where to go to get the information you need, and maybe our two doctors will be able to help you by telling you other things you can do. Also, I would look for another homecare group to use in case you wish to change soon.
I have to add what was told to my Aunt in Seattle when she had the paramedics come to the house since my stage 7 Uncle had fallen in the bathroom against the door so it was impossible for him to be retreived through normal means. The door had to be taken off the hinges to gain access to him since he was responsive verbally but unable to get off the floor away from the door he couldn't understand the concept of getting up and opening the door even though repeatedly he was told to never shut the door to the bathroom when he was in there. She was told by a elder patient advocate after that incident that if she did not place him in a nursing facility that she would be held liable and would be arrested since it was obvious that this could happen again and maybe medical emergencies result from another fall etc etc. This particular government agency was well aware of the aspects of the disease. He was placed in a veteran facility and died there last month
As RN with a bachelors degree in nursing I would evaluate the situation and using professional terminology - "Question the validity of their care plan".
The interventions that they are proposing are (of course) inappropriate for the patient situation.
Their suggestions (the care plan) seems to be drawn from the diagnosises of general debilitation, cardio vascular insuficiency and diabetes. (not your husbands problems, but most likely the problems for MOST of their clients) I bring this up so that you can repeat it and have professional sounding ammo to refute their claims.
From a nursing point of view your husband (most likely) has "Self Care Deficit" and "Impaired Mobility" and all health care plans need to reflect these issues. ANYBODY providing nursing care (at the professional, vocational or technical level) should be following a care plan tailored to the needs of the patient. (that does not seem to be the case here)
Suggestions: 1. Expect a visit from Adult Protective Services - one call from them and APS must invesigate. If APS does not show up they may have been just been using them to threaten you. While it is not against the law to use protective services to harass someone it should be. It also shows their incompetence at being able to provide appropriate care specific to your husband.
2. Explain to APS your husband's Dx and health care problems. Include any written recomendedations you have from his physician. 3. Explain to them your plan of care. (which is what you have done here) 4. Request that the agency explain why THEIR plan of care and reccomended interventions are indicated or appropriate for your husband and his specific problems. 5. Find another agency they obviously dont want you and your husband as clients.
Wow! Thank you ALL for your support! Never have I been so welcomed and listened to, during an angry rant. Of course, I am calming down and thinking a bit more rationally now.
I did go on the AD website and of course, bathing is addressed, along with many other issues we all face. I printed off pages and pages to educate any case manager that may need more information.
I believe that all of us walking in these crappy shoes do the best we can. I know the sacrifices you have all made, as I make them too. I know the heartache you feel, I feel it too. I know how hard you work to keep your loved one safe and secure cuz I do it too.
My husband has an orphan neuro disease. We found a Dr in ABQ that is familiar with the type he has. When we went in for our first appointment, she marveled at how wonderful he looked after 30 years of fighting this disease. (Most die within 20 years.) This is not due to my efforts, but also genetics, my husbands efforts, positive outlooks, prayer, love, luck and a good toss of the dice. THIS is the attitude from professionals we need..not accusations of lack of care, but education as to what is appropriate loving care for our loved ones.
Patty-you will be amazed by the support and education from our motley crew. Who but we know the hell we live with. Hopefully you will join us in our antics from time to time. It's not all joyless. Do you have any pets?
Ahh..pets. Funny you should mention them bluedaze, We used to have 4 shelties, now down to just 2. One geriatric, one 6month old. 2 cats and 2 turtles and an albino frog. I know this road we are on is not all joyless.. some of it is sickly funny if not downrite macabre.
I will be joining in to the best of my ability...I have officially adopted you all, along with the dogs, cats, turtles and frog.
Don't know if I have the background to help anyone, but I have two hands to hold and shoulders to cry on if anyone needs.
Patty-none of us had background. Some of us are doctors and nurses. Nothing prepared us for this monster. We are learning together to advocate and fight for our loved ones. I am a home health nurse and was clueless about my own husband. One of the old threads was about "can they control it". If I can find it I'll bring it up to the top for you. Nora
Welcome Patty, Just as an aside, I hope APS never comes here the day before his WEEKLY shower, they would see an OLD man, grizzled, unshaven and without his teeth in. If they come the next day, they would see a clean, shaven nice looking man who simply doesn't know where he lives or what day it is, but at least he's clean and shaven. Same man, different day. GIVE ME A BREAK! We do this once a week because that's how often we can.
I have had 2 health care agencies too and both of them sit down way before you hire them and evaluate your needs as well as the clients. they tailor THEIR needs accordingly to each case-. in my case, a shower change of clothes/shave/feeding/helping with meds/fluid intake/bathroom visits/ and gentle observation is what is required for him at this point. for me, they do laundry and easy kitchen cleanup..that is what i ASKED them to do, and got it..you should change agency today if you havent already and get a person to evaluate his needs and yours. divvi
I'm not dealing with agencies at this point, but I'd suggest that doing what divvi said and having the new agency's report in hand might just take the sting out of whatever the first agency said if they actually reported anything. I'd do it for self protection.
My husband is still doing his own showering, but even he isn't getting more than two of them a week. I have to suggest that he take them, and if I do it too often, he balks. So I suggest one every 3 to 4 days. He doesn't smell funny. He isn't doing anything to get dirty. When it was summertime he would come back from his walk and he wanted a shower, so then he had them more often.
Unless I totally misunderstand, this seems to be a situation of a home care agency that is hopelessly unqualified to handle your husband's case, and is using threats and intimidation to keep YOU from reporting THEM. It is ridiculous for them to threaten you with APS. What the hey else are THEY supposed to be doing, if not bathing him and making sure he eats properly and making sure he gets the appropriate amount of activity, and making sure he is safe? What, exactly, do you pay them for, any way?
And who the blank blank blank are they to order you to place him in a NH? Begging their pardon, but nobody but a court can "order" placement.
The office staff are threatening to report the aide? ... who, exactly, provided this aide? Certified to you that the aide was qualified? This same "office"? Are they threatening to report themselves?
Oh dear, oh dear, I need to go take some blood pressure medicine.
As divvi says you should change to a different agency today, if you haven't already.
And I'd give serious consideration to finding out where to file a complaint against your current agency, for their totally outrageous behavior.
I would say that agency does not know beans about what they are doing. My husband's caregiver's come through our local Community Action Program. They are wonderful and have been a God send to me. They came into my home, assessed his needs, we decided on a treatment plan. Then they turned to me and said, "That will take care of him, what can we do for you?" He is showered and shaved 3 times a week and his dentures are done every day. His appetite is good and he eats whatever he wants, some of it is healthy, some of it is not. At this stage of the game none of us are too worried about it, it is one of the few pleasures he has left. For me they mop the kitchen floor, run the sweeper and change my bed (all things that hurt my bad back). I know that he is in good hands while I work and they are a great emotional support for me. None of us deserves any less nor should we put up with less.